Debilitating, undiagnosed set of symptoms - anyone recognize? — Scope | Disability forum
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Debilitating, undiagnosed set of symptoms - anyone recognize?

Hello,

I recently came across this forum, and it is nice to know that I'm not the only one who suffers froma disabling, undiagnosed condition. I feel like I can't really talk to anyone about this because no one seems to take me seriously. I will list a few symptoms in the hope that someone can recognize them (though I doubt that will happen...); I've had this for 6 years.

Basically, I can feel and hear a hard mass right above my right ear; I have some pretty bad neurological symptoms such as memory loss and confusion. I've been to a neurologist and I had an MRI without contrast and nothing was found....

My symptoms (and the pain above my ear) get worse whenever I swallow and also whenever anything squeezes my neck (such as a tie); doing physical activity also seems to worsen my symptoms. Sometimes I get some very sharp, stabbing pain.

When I turn my head, I can sometimes hear a cracking sound, like when you crack your fingers, but it comes from right above my ear. The exact area seems to be right above the external auditory canal (like in the temporal bone above it).......I really dont know what to do, I've had to quit my job and no one seems to be able to help me....

Comments

  • LaughingLolly
    LaughingLolly Member Posts: 100 Pioneering
    You sound like you have TMJ disorder. Check it out here: https://www.mayoclinic.org/diseases-conditions/tmj/symptoms-causes/syc-20350941
    A laugh a day keeps the psychiatrist at bay. 
  • LaughingLolly
    LaughingLolly Member Posts: 100 Pioneering
    @mg94 sorry I forgot to tag you. See my comment above 
    A laugh a day keeps the psychiatrist at bay. 
  • mg94
    mg94 Member Posts: 5 Listener
    @LaughingLolly Hey thanks so much for your input! I have checked with a dentist and it doesnt seem to be the case (also because for me the most problematic symptoms are neurological - muscles shaking on their own and really really bad memory). But I really appreciate your input seriously.
  • LaughingLolly
    LaughingLolly Member Posts: 100 Pioneering
    @mg94 then perhaps you have a mild case of functional neurological Disorder? There is another post about it on here. FND 
    A laugh a day keeps the psychiatrist at bay. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,565 Disability Gamechanger
    Hi @mg94 and a warm welcome to the community! I am so glad you have found it helpful and you certainly are not alone! FND (as described by @LaughingLolly) has been talked about on the community by numerous people. Here is an example. FND hope is also one of the most recognised FND charities and may explain things further. I hope this helps!
    Scope

  • mg94
    mg94 Member Posts: 5 Listener
    @LaughingLolly @Chloe_Scope
     
    Thanks for your inputs and your kindness; helping a complete stranger is always admirable.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,565 Disability Gamechanger
    Always here to help @mg94 :)
    Scope

  • dolfrog
    dolfrog Member Posts: 441 Pioneering
    Human working memory, also known as short term memory, has limited capacity, is like the RAM of a computer where we run our daily tasks, and we prioritise how we use it subconsciously. Top priority is coping with any illness we may have, next coping with any stresses and or anxiety, next running any alternative compensating skills and abilities (coping strategies), and then our daily tasks. 
    May be the stresses of living with the problems you are experiencing are causing some working memory issues. 
  • mg94
    mg94 Member Posts: 5 Listener
    @dolfrog
    Hey dolfrog; thanks for your response. I agree with you that stress can cause memory issues, but in my case I do not believe it is a key factor. My symptoms are really strange; like for instance, whenever I swallow  they get worse. So after a meal I feel particularly disoriented and in a bit of pain. I'm not much of a smoker, though I occasionally have bummed a smoke from someone else, and I noticed that  also when I smoke, my symptoms get worse, leading me to believe that there is some kind of ear-throat-nose connection. The thing that relieves my symptoms the most (including cognitive symptoms) is going through long periods of time of not swallowing (as much as is possible)...my pain is reduced and I get mental clarity. Also, listening to music through an earphone on my right ear worsens my symptoms as well...

    I know it sounds incredibly strange, and that's why it's so hard to understand what it is. What I've learned in my journey is that the human body is extremely complicated and fragile, so treat yours with care! 

    Anyway, I appreciate your contribution to the discussion. I didn't expect anyone to actually answer me! I hope I can help others as well whenever they post questions.
  • dolfrog
    dolfrog Member Posts: 441 Pioneering
    @mg94
    Having swallowing problems can be a motor issue, which can be part of Developmental Coordination Disorder (formally known as dyspraxia) and adults can acquire these types of issues as a result of brain injury, stroke, or dementia and can be part of what is called Apraxia.
    You may be surprised by this but swallowing issues are part of the remit of Speech and Language Pathology. 
  • mg94
    mg94 Member Posts: 5 Listener
    @dolfrog
    I don't mean that I have swallowing problems in the sense that I can't swallow. What I mean is that when I swallow, there is something which harms me (like right behind my ear) and worsens my symptoms, including the neurological ones. Not swallowing on the other hand, relieves me.


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